Experiences of families of prolonged critical illness survivors that are discharged home: An integrative review of the literature

Abstract

Background: Within the context of the increasing prevalence of prolonged critical illness, a situation intensified by the COVID-19 global pandemic, advancing understanding of the experiences of families of survivors that are discharged home is important in understanding the complexity of life for these people.Aims: To examine research related to the experiences of families of survivors of prolonged critical illness that are discharged home.Study design: This review was conducted using the Whittemore and Knafl framework for integrated literature reviews. A literature search was conducted using the electronic databases of Web of Science, CINHAL, Scopus, and PubMed for English language studies published between January 2002 and October 2021. Article titles and abstracts were screened in view of finding a selection of articles that focussed on the experiences of families of people who have survived a prolonged intensive care stay that are discharged home. Study quality was assessed using the CASP (Critical Appraisal Skills Programme) tool. Data analysis of nine peer-reviewed articles was informed by the Braun and Clarke approach to thematic analysis. The PRISMA guidelines were used to report the review process.Results: Nine articles were included in the review. Three major themes were identified, namely, (i) the negative impact on family caregiver health and well-being, (ii) caregiver burden, and (iii) unmet support needs.Conclusions: Families of prolonged critical illness survivors that are discharged home face complex challenges that make their experience difficult and demanding. Family support needs once patients are discharged home are largely unrecognized in this population.Relevance to clinical practice: This review evidences the need to investigate further the experiences of families of survivors of prolonged critical illness. Further qualitative research has the potential to help inform service provision and support for these people.

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“…The transition from PMV to long-term or permanent mechanical ventilation can be especially complex and often requires significant planning and family/institutional support. A recent review performed by Best et al (2023) found that families often have unmet support needs post discharge. A key theme in our study was that practice models in this population must include pro-active discharge preparation and comprehensive transfers of care that include both patient and family members.…”

Assessing the impact of creating virtual windows on the incidence of delirium in a surgical intensive care unit: a before and after study

“…The transition from PMV to long-term or permanent mechanical ventilation can be especially complex and often requires significant planning and family/institutional support. A recent review performed by Best et al (2023) found that families often have unmet support needs post discharge. A key theme in our study was that practice models in this population must include pro-active discharge preparation and comprehensive transfers of care that include both patient and family members.…”

Introduction to this special issue on rehabilitation during and after critical care

“…The authors highlight the need for a specialist, co-ordinated and personalized recovery pathway for effective rehabilitation following a critical illness. 19 An integrative review provides findings from nine papers that examined experiences of families of ICU patients discharged home following a prolonged critical care stay. 16 Family members offered both physical and psycho-emotional support to patients during recovery.…”

“…One of the findings in this study was the difficulty faced in navigating complex systems during recovery, which was increased due to the fear and uncertainty caused by the pandemic. The authors highlight the need for a specialist, co‐ordinated and personalized recovery pathway for effective rehabilitation following a critical illness 19 …”